Wednesday, October 26, 2011


Often times when the going gets a little rougher than normal I am able to find, from somewhere down deep inside, a reserve supply of grin-and-bear-it fuel. But this week the tank seems to be empty. I realized this on Sunday when OLA started to melt mid-way through the main service of church. He was mad at both BBA and I over something that was trivial to us - but obviously not to him. I tried comforting, distracting, and asking him to walk out of the chapel with me to get a drink. He is physically too big for me to lift anymore. So we were kind of stuck. He started to get a little bit loud and aggressive. After a few minutes I just got up and left. I've never done this before - too scared of what he might do when I'm not there.  And I didn't come back - I went down to one of the classrooms and cried. My husband sits up next to the pulpit and was unavailable at the moment. And I guess BBA left too, to escape the rising tide.  A good friend of mine noticed what was happening and came to sit with OLA. He calmed down and went to his class after the main service was over. I continued to hide out in the bathroom until a few minutes into these classes and then quietly slipped out. My husband noticed me and followed. He suggested I go home - something I've never done before - at least not this way. He even drove me there and let me have some time to myself to try and regroup.
Unfortunately - the tank and the reserve have already been spent. I have had a tough time recharging this week. The battle is raging on all the fronts and I'm not sure we are winning.  And I certainly don't know how I'm going to recharge and I'm struggling with the desire of facing the gantlet of church services this next Sunday. I don't know if I can find the reserve to do it all over again this next time. I'm too tired and too empty to keep swimming against the waves.

Thursday, October 13, 2011

Stop the Ride-I Want to Get Off!!!

The day before school started I had a meeting at school with OLA's teacher and other pertinent school personal. One of the things that was discussed was my "scribing for him - so that homework battles could be avoided. It was a relief because homework overall has been less stressful for everybody involved. However, this last week I received an email from OLA's teacher asking me to stop scribing for him with his practice math facts sheets. His teacher feels that it is interfering with his ability to pass the tests in two minutes. I was so angry I didn't even answer the email.  But, the next time a fact sheet came home I told OLA that he was on his own as per his teacher's request. I handed him the sheet of facts and a pencil. That sheet and the two I had scribed for where promptly crumpled and tossed across the room, followed by OLA running to his bedroom and saying he was not going to school. (Lovely!!!) I calmly picked up the papers and returned them to his folder some what wrinkled (LOL). I told him to get his bag and go out to the car. Amazingly he complied. This processes has been repeated now several times. He has about five unfinished fact sheets in his folder that returns home each day from school with a new set added.  I am so frustrated I could scream. I will not return to the battles that where so disruptive to our entire family last school year. But OLA keeps getting further behind. And to top it off - because we aren't doing those sheets he isn't practicing at all. Before he would have to give me the answer before I would scribe so he was practicing orally his math facts. I would suggest that the teacher give him the test orally - but I don't think he can even do it orally in two minutes. He just doesn't compute in his head that fast and the more stressful the situation the worse it gets (i.e. a time limit).  Having a child with special needs changes how you think about a lot of things and their importance. I was a teacher by trade (pre-children) and there was a time that I put great importance on math fact tests. But those feelings have changed (I understand the reasoning behind memorising certain math facts and  being able to access them quickly). I feel that for OLA it is more important that he knows them (i.e. memorised) than whether or not he can do 25 addition facts in two minutes or less. And in fact I celebrate his accomplishment in being able to do them - I am not worried about the fact that it takes him a minute or two longer to get it done.  So for now we sit with this stalemate and a whole lot of frustration. I feel like I am punishing OLA for something he has no control over - but somehow those at school must understand that there are needs here that are different from most children. For now I have taken to weeping into my pillow again at night and sending undone fact sheets back to school. I wish I could just stop this crazy roller coaster and get off the ride. I'm tired of having to fight for every little thing. I really wish people would make an effort to understand. But I guess if you haven't ridden the roller coaster there is know way to understand and most people don't want to get on!!!!

Wednesday, October 5, 2011

The Devil You Say!!

The "Devil" himself, designed this day. We had an appointment with the Geneticist today. We were really impressed with her - when we finally met her. Our appointment was scheduled for 10:15a.m. Check in was suppose to be at 10:00a.m. We finally checked in at about 10:45a.m and saw the doctor about 11:00a.m.  We spent an hour with her which was good - we will know the results in about 4 to 6 weeks. It was after that the nightmare began. They sent us over to the hospital for an outpatient x-ray and blood draw. It was suppose to be in an out. As we are walking over to the hospital from the clinic OLA realizes that a blood draw means a needle and he starts to stress. We get to outpatient and everything starts to go down hill.  They are working with a brand new computer registration system - this is there third day. It took nearly an hour to get checked in. (I kid you not). By now OLA is tired, hungry, board and worked up. We finally get checked in and in ten minutes they call for the x-ray. (they saved the best for last - LOL). After the x-ray the Tech calls the lab and they say they will be right there to get him. Twenty minutes later. They come - OLA is now unravelling at the seams. The first lab tech isn't sure what they need or that she can handle a behaviorally challenged child by herself, so she calls for back up. Not cool. ten or fifteen more minutes pass before the second lab tech gets there.  OLA veins are well hidden they patted a probed but were having a hard time trying to find  anything. At last they think they have found something and they stick (thankfully they hadn't done this before). They vein isn't a go and collapses within seconds. They call a third tech. By this time OLA is getting super stressed and is going down hill. We are on our way to melt down. The third tech arrives about five minutes later. He does is patting and looking at the other arm. (Needless to say OLA isn't thrilled about being poked a second time and we are having to restrain him.). Thankfully this tech is awesome and he finds a good vein the first try and a couple of minutes later we are done. Needless to day what should of taken fifteen to twenty minutes took two and a half hours. The parking lot after was not much fun. OLA melted and I don't blame him. Thank heavens that's done!!!! Big huge sigh of relief.  But as I said the "Devil" himself designed this day!!!

Monday, October 3, 2011

Another Week

We've started another week of school.  So far we've had modest success with the reward OLA's teacher offered for being on time. OLA gets to be the teacher's helper and turn on the classroom computers if he is there on time in the morning. It is great for now - but it will be interesting to see how long this lasts. I spent part of last Thursday morning visiting with the school counselor about what is going on. She is suppose to go in this morning and observe him to see if we can find additional ways of helping him be less stressed. This too will be interesting to see if anything comes up. It is very frustrating to have to constently fight everyone over this.
We also finally go to see the Genetisist this week. This appointment has been five months in the making. It will be enlightning to see if they confirm anything or if they just add to his laundry list of labels. Since he's beginning to look like alphabet soup. Lot's of labels but know solutions. Round and round we go where this merry-go-round stops nobody knows!!